Bring Me Men to Match My Mountains

“Bring me men to match my mountains, Bring me men to match my plains, Men with empires in their purpose, And new eras in their brains” – Sam Walter Foss

Do we have researchers with the vision to match this disease? I think we do…

A modern day equivalent for chronic fatigue syndrome might be “Give me data to match my disorder and researchers with new era’s of research in their brains”. I think we have researchers with visions of new era’s of research animating their actions. The Kogelnik’s, Vernon’s, Klimas’s and others see the possibility of new eras of research informing this disorder and they are yearning for it – they can probably taste it in their mouths – and all they need is the money to achieve it. They all believe gathering ‘big data’ holds great promise for this disorder and they’re not alone. Big Pharma insider and provocateur Bernard Munos again and again trumpeted the need for data – more and more data – in ME/CFS research in his talk at the FDA Stakeholders Meeting.

So we need data, we already have some, but not enough and not in right format and not good enough. We need more and better data. We need tools to go along with the data. We need partners, we need money and lastly, we need leadership and passion. Bernard Munos

A big messy disease like chronic fatigue syndrome is going to need data to clean it up; data to dig through the mounds of genetic, gene expression, lab and clinical data and then latch onto the core issues….. data to dig out and verify the subsets…data to interest Big Pharma (and “Big Research” ). “Build it and they will come” said Munos. With the grant the Open Medicine Institute just scored from the VMWare Foundation to expand its data gathering infrastructure, the OMI is beginning it build it. In his talk at the FDA Stakeholders Meeting Dr. Peterson laid out good reasons (several billion of them) why they will come. I think they will.

The Next Step

Big Disease – Meet Big Data: The OMI’s new grant will allow it to use big data to get at the core issues in this disorder.

This grant of IT personnel and resources is about building capacity…and that means Open Medicine Institute probably has the infrastructure to capture as much information as we can give them. Some may balk at that but I welcome placing absolutely every scrap of information (properly de-identified) I have on my disorder in the databanks of an organization focused on beating this disease. The opening of the OMI’s program to collect that information – OpenMedNet – will soon allow people with ME/CFS to contribute to ME/CFS research by entering the data they have…..and by collecting data over time. That’s next up on the OMI’s agenda. The grant will also give the OMI the capacity to build the mega patient registry they’re committed to building. It provides the underpinning of much of what they want to do.

The OMI is off to an excellent start with two major grants to explore the genetics and help produce the information infrastructure needed to understand this disorder. At the Invest in ME meeting this month, Dr. Kogelnik and Linda Tannenbaum will unveil more about how we can contribute to the end of ME/CFS as we know it by providing data on a scale we haven’t seen before. It’s going to be interesting…:)

Infrastructure Building Coming of Age in ME/CFS

Two groups, in particular, the Open Medicine Institute and the CFIDS Association of America (CAA) are focused on developing the information infrastructure needed to generate faster movement in understanding and treating ME/CFS. Infrastructure development is not particularly sexy; freeways, for instance, aren’t sexy but boy do they get you to your destination faster and that’s the plan here. IT infrastructure doesn’t create breakthroughs – it enables them. The CAA will come out with their set of data aggregation and collection tools soon and their project to build patient registries that make it easier and cheaper to conduct clinical trials won the Sanofi Challenge last year. Kudo’s to both organizations for taking a long term view of this disorder and its needs and building for the future.

Comments

I’m very happy to hear this Big Data Gathering Project! Finally we are turning the page, finally somebody young and bright is pushing the research and the translational field to the next level. This is the kind of 21st century vision that made me go see Dr. Kogelnik. Now if only we can get more grants …! Thank you Cort for your excellent work, you’re one of a kind reporter.

Thanks VB…You know I’m an optimist but I really do think that with the CAA and the OMI doing this kind stuff – things are going to start to pop! It’s going to take some time for sure…but major league infrastructure is being built..and in several places. I love these developments.

That’s very interesting indeed, from both OMI and the CAA. I’m sure you’re right that we will need a lot of data to crack a messy illness like ME/CFS. Thanks for keeping your finger on the pulse of CFS research.

Thank you Cort, another very interesting article! I’m tremendously excited by the Open Medicine Institute’s Big Data approach to understanding this disease. I liked your quote, “A big messy disease like chronic fatigue syndrome is going to need data to clean it up”. IT support sounds esoteric, but it has everything to do with helping drug companies understand this disease – and find therpaeutic targets for treatment and cures.

This is one area where the heartfelt mini-stories of patients can influence philanthropists. We can tell them – in a minute – how serious these diseases are; show them how global their impact is with their philanthropy; and hopefully influence them to give again; or tell their philanthropy friends to do so!

Thanks again Parvo for doing that :). I signed the card. Yes, it is all about getting big drug companies and the research community feeling they can understand this disease enough to produce drugs for it and research…

Thank you Cort ,for being the voice for so many of us, who desperately want to help bring light to our cause. I spend countless hours reading, researching. After spending 24 years of fighting something that has taken it’s toll on my mind, body & spirit. I don’t even know who I am anymore, as I look in the mirror, I don’t recognize myself. I a 80-90% dysfunctional. Physicians look at me with a blank stare, one referral after another. I came to Kauai Hawaii , in hopes I would recover, as winters are to brutal to withstand. Quite frankly I really don’t have it in me any more, with little little hope left, as my body has lost it’s muscle tone and my tissues are wasting away.., At this stage of the game. It’s is a scary feeling knowing deep inside, I am running out of time, in itself, time is simply a persons own concept of reality. It’s not just the pain, or all the symptoms we deal with? It is the magnitude, of how it has taken away the memory of who we once were and the shadow of what we are now? I was 28, I am now age 53. I often wonder what my life would have looked like, or what I could have accomplished?
The isolation, financial hardships and the journey has taken more courage to live than to die.. Having no sense of purpose, self esteem or quality of life. I am a strong willed and an avid advocate, for patients who need a criteria for long term patients, to end there pain without judgement peacefully. For many of us we simply don’t have the financial resources or travel to Switzerland. I was just writing about creating a national data-base registry, where patients history can be tracked. as well as helping the most severe cases, bring an end to there suffering. My Son is exhibiting classic signs of cognitive disruption,ADHD at the young age of 20. I had hoped in some way I could help him. Sadly I have nothing to offer him. I pray my Daughter whom I haven’t seen in 13 years, will not end up like me… Thank You to so many of you,who are truly fighting, in finding ways to keep track of us. It will surely open some new doors. We have the technology now, I pray it won’t take another decade. I know your on the right track. Bess all of you, for stepping up to the plate. Cort, your a very special person and writer, who gives the gift of hope, sheding light for so many. Keep up the good work! Respectfully, Lona

What a rough road you’ve had Elona. I recognize that you’re facing really daunting circumstances but I really hope you can hang in there. I do think the new technology will reveal alot. I hope you can be there to see it when it comes. I think that when researchers find out what’s going on they’re going to be shocked and will flock to it. You never know what might be around the corner.